Freddy's college graduation, and why I'm not there

Today, my younger son Freddy graduates from Skidmore College with a degree in computer science.  It hasn't been the easiest road for him, and I am incredibly proud of him.  And I am also very, very frustrated, because I can't be with him.

Most days, I keep a positive attitude.  It's important to me to do so.  Janey means the world to me.  I love her more than I can possibly express. She has brought us so much joy.  That being said, there are times when the whole autism parenting life is so tough that I am overwhelmed completely.  Today is one of those days.

There is no-one who can care for Janey today, to make it possible for Tony, William and me together to be at Freddy's graduation and celebrate his success.  There is no respite---not on regular days and not on special days. There are several people who would have loved to be able to watch Janey, but that just were not up to the task, and honestly told me so.  I appreciate that.  The last thing I would ever want is someone caring for Janey that would be overwhelmed by doing so.  There are other people who would have been able to care for her but that live far away---I'm thinking of many of you!  But in reality, there is just not any respite.  Even today.

We thought about taking Janey and all going.  But a quick think-through of that killed that notion.  Janey would last about 5 minutes at most at the graduation. Then, one of us would have to take her outside, walk around with her. This would keep her happy maybe for 10 more minutes.  Then, she'd be upset, screaming.  The person watching her would, to say the very least, not be having a good time.  The family inside at graduation would not be able to concentrate and honor Freddy.  They would be thinking about how it was going with Janey.  Or, we could have gotten a hotel room for a few nights, to have a place to stay with Janey.  If that hadn't been extremely expensive (it's racing season in Saratoga Springs, and even a very cheap hotel, especially on graduation weekend, is insanely high priced), it still would have resulted in a long period of time in a room trying to keep Janey happy, and not seeing the graduation.  If one of us wasn't going to see the graduation anyway, it might as well be at home, with the resources we have here.  Tony missed Freddy's high school graduation.  At that time, Janey was in the hospital recovering with many complications from her burst appendix.  So---it was his turn to get to go to the graduation.

And I'm here, at home.  And Janey isn't happy.  She wants to go for a car ride.  I have taken her outside repeatedly to see there simply isn't a car here to ride in.  That doesn't matter.  If she wants a ride, there should be a car.  She is miserable.  There is no explaining to her that it's Freddy's day.  That is not something she understands.  She repeatedly says to me "Put on shoes!"  "Get jacket!"  "Get pocketbook!".  She tries in vain to get me to see that she needs her car ride.  And I am tired.

I've been sick for the last week.  It's a very slow recovery.  But like the car, that doesn't make a difference.  Janey doesn't get I'm sick.  I am exhausted.  And realizing, for the millionth time, how lucky it is that Tony is retired now.  We are broke, and we probably always will be from now on, but there really wasn't a choice.  Neither of us were going to last with him still working.  The years of little sleep and little down time added up.  It's incredible, still, that the two of us at times can sit down and watch a TV show alone, while Janey is at school or asleep.  And if this is life from now on, so be it.  But on days like this, it is hard to not reflect on the toll autism parenting has taken on our lives.  NOT that Janey has taken.  That autism in her particular form has taken.

I don't have solutions.  In thinking about writing this post, I wanted to close with ideas for making things better and easier for Janey and for all of us.  But I don't know how.  It would take an overhauling of our whole society, and at this point in time, that's beyond a pipe dream.

So, I asked myself, why write about this at all?  Why upset those who rightfully might feel that I should not explore the negative side, the negative feelings that this day has brought to me?

And I answered myself---well, why do I read memoirs?  Why do I avidly read about other lives?  For one of two reasons.  I read to hear about a life unlike my own, to better understand what it would be like to be someone else---someone affected by war, or by blindness, someone who grew up in a very different culture or family, someone living a life I'm not living.  I write to share our lives with others.  The second reason I read memoirs is to read about people living a life LIKE my own, to feel less alone.  That is the second reason I write here---because I know I'm not the only one living this life, and I want to be honest about my life to let them know they are not the only one.

All my love today to Freddy, my graduate.  I know you understand why I'm not there, but I hope you also know how much I wish I could be, and how much I love you, and William, and Janey.  Always.

Frederick David Amara, my dear son

Pulling the plug on summer school

I decided yesterday to not send Janey to the rest of summer school.  There wasn't that much left---just the rest of this week and then next week, seven days.

The decision wasn't actually that tough to make.  Janey had been consistently resisting getting on the bus every morning.  Waiting for the bus had become rather hellish most days.  Through no fault of the bus driver, the times the bus arrived were very varied.  So we had to get outside well before it arrived some days, while other days, it showed up almost right when we started waiting.  The days it didn't, though, Janey did everything in her power to go back inside.  

Yesterday morning was the worst, although the bus arrived quite early.  But before it did, Janey screamed a lot, bit her arm over and over, and then almost bit me, with only a quick jump aside on my part keeping her from doing so.  Right after that, the bus showed up, and she got on.  She always got on like a stoic once the bus did arrive.  

I had my annual physical yesterday morning.  When I got back, there was a call on the machine from Janey's summer school teacher.  I called him back, and he said that day and the past 4 or 5 days of summer school had been very tough, with Janey screaming a good deal, and he wanted to know if anything at home had been different, like Janey's eating or sleeping.  It hadn't been, but in a rare case of me deciding anything on the fly, I realized this just wasn't all worth it, and I told him I'd decided to keep Janey home for the rest of the session.

When Janey got home, I told her summer school was all done.  She didn't really react, but a few minutes later, she came up to me and hugged me---a huge, tight hug, the kind we almost never get from her.  She didn't let go for a long time.  I'm pretty sure that was her reaction.

The whole summer school debacle brings up a couple issues for me.  One is how it's really impossible to find out from Janey how things are going when she's not with me, and the other is the lack of activities truly open to Janey in the summer (or year round, actually)

When it became apparent this summer that Janey wasn't eager to go to summer school, I tried hard to talk with her about it.  But asking Janey questions is next to impossible.  She never answers open-ended questions like "How is summer school?".  Never.  If I give her choices, like "Is summer school good or bad?", she picks one of the answers randomly, usually the last choice given.  If I give her starter sentences, like "At summer school, I feel...." she will occasionally fill in the blank, but she does so with what she thinks is the "right" answer, not what she actually feels.  For example, she can be screaming her head off, and I say "right now, I feel..." and she will say "Happy" 

I am grateful the Boston schools offer the summer programming they do, but from what I have been able to gather over the years, it's very different than "winter" school.  It's also very much school, not camp.  It is aimed at maintaining academic progress.  The class sizes are much bigger than during the regular year, and the schools are held in whatever building has air conditioning.  Unlike most summer programming for most kids, there isn't really much of a fun component.  So for Janey, it basically is all day in a room with a lot of other kids (based on the kids on the bus, pretty much all other boys), working on academics, which is not something she is good at or enjoys.

The thing is, there's very little in the way of alternatives.  Yesterday at the doctors, I saw a magazine that had a headline "The importance of special needs summer camps" and I gave it a look, just to crack myself up.  As I figured, they were the same old options, camps that in no way would accept Janey, camps that pride themselves on "inclusion", if by inclusion you mean that if your child can pass as not having special needs, they are happy to have them there.  They are not camps for someone like Janey.

And of course, it's not essential someone goes to camp.  I personally hated camp, the few times I tried it.  Summer was freedom, a time to do what I wanted, to spend time with friends, to walk through the little woods across the street from me that led to the harbor where I spent much of my time, swimming and watching birds and reading.  Summer was playing double solitaire with my sister while we listened for our favorite songs on the radio.  Summer was walking the three miles into town to buy penny candy.  Summer was sleeping outside in our woodlot.  Summer was working in my mother's store, and using the money I earned to have my father bring me home a Mister Misty Float, and going outside with a book and making that float last for an hour.  Summer, although never my favorite season, was many things when I was Janey's age, and none of those things are things Janey can do.

In two weeks, Janey will be 13, a teenager.  Instead of her world getting bigger, as mine did as I got older, Janey's world seems to get smaller as time goes on.  Playgrounds and spray parks  don't much welcome a child who looks like an adult among the little ones running around.  Janey can't walk alone to the store for candy, and she probably never will be able to.  She has no friends.  She is not going to spend the night with her friends, laughing until way too late, like I did with Laurel or Marie or Julie or Wendy.  She isn't going to play double solitaire with her sister all summer only to realize that said sister was using a totally different set of rules, and that was why Carrie always won and I always lost, and still, remembering those games during which we hoped uncoolly that the latest Barry Manilow or Dan Fogelberg song would come on WABI, the uncool radio station,  is one of my favorite memories.  Janey's life is very limited.  I know that I'm supposed to think of the bright side, to think perhaps she doesn't see it that way, but today, I am feeling like in many ways, that is a tragedy.  

Summer memories

Today was the day I think of as the first day of summer---the first day of the first full week without school.  I will be totally honest and say it's a day I dread.  I've never, ever liked summer much.  I don't like the heat or the lack of routine.  With Janey, a summer day can feel endless.  I am very grateful for summer school, which starts in two weeks.  But today---it was a long day.  Janey screamed a lot, cried a lot, just was very out of sorts.  I felt out of ideas for the whole summer by nine in the morning.

Tonight, looking back on today, I realized something interesting.  Janey knew what the day was.  She knew it was the start of summer.  I realized that because of what she asked for.  First thing in the morning, she wanted to walk to the "ice cream store".  That was our routine last summer, almost every day, to walk to the convenience store about 5 houses down and get something to eat.  We did that.  A bit later, she went into her bathing suit drawer and pulled out her suit, and said "want to go swimming?"  She didn't really want to go, and resisted once I tried to put the suit on (I was going to do the backyard wading pool), but that's another summer routine.  Later, near time for Tony to come home, she put on her shoes and said "Go see Daddy?"  Again, something we did very often last summer---walked to the train station to meet Tony as he came home.  We haven't done it since last summer.  Lastly, she then asked "Get Chinese rice?'  Yet another thing from last summer---having Tony bring home Chinese food often.

I don't know how it made me feel that Janey remembered all that.  It made me feel sort of guilty, that her summer memories are of such mundane things.  It made me realize how much she gets routines, and how often when she's upset, it might be that a routine that I didn't even know was in place was broken.  It made me think about how much goes on in her head that I have no way to access, and how boring life might often seem for her.

I wish I could do more with Janey in the summer.  But there are so few things she can actually tolerate and enjoy, more so now that she is older and bigger.  There are splash parks around, but they are filled with toddlers and preschoolers.  Janey is the size of an adult, and unpredictable around younger kids.  There's all kinds of camps and programs---none of which are able or willing to take Janey, except for the ESY summer program at her school.  Any store or museum or library or pretty much any public venue, I can't do alone with Janey, even if she did enjoy them for more than a minute or so, which she usually doesn't.  The Thomas Land park was great, but I would not even do that alone, even if it wasn't an hour away and very costly.  So, much of the time, we stay home.

With that being said, I am hugely looking forward to later this week.  We are taking a trip!  Tony and Janey and I are going on a road trip to see a friend I met through this blog and her family! (the boys are staying home to care for the house and cats and so on)  I've arranged it so we don't drive more than 4 hours in a day, and we are staying at hotels with pools.  We are going to keep everything as low key as possible.  I still am not sure how it will go with Janey, but I hope well.  She does like the car, and hotels. If it goes well, it's the kind of trip Tony and I both want to do a lot more of. Maybe someday we will visit more of you that read this blog, if you want us to! (We'd stay at a hotel, of course!)  So wish us luck in making some new summer memories for Janey.  I plan to blog the road trip, or at least post on the Facebook group each day, hopefully with good news of good times!

The days and weeks and months and years

I'm feeling low tonight.   Janey has been fairly good.  She had a great week after restarting the medication, a honeymoon period we often see with something new with her.  Now, she is still fairly happy, but the screams and repetitive requests are sneaking back.  But it's more than right now.  It's how the days and weeks and months and years have been, and will be.

I'm thinking a lot lately about life getting away from me, about all the things I can't do.  I've been wanting to get up to Maine very much, where my parents live and where I grew up.  I want to see my parents and friends there, and just to be in coastal Maine in the summer---something that is one of the best things life on this planet has to offer.  But I can't.  I can barely go to the next room a lot of times.  Any time off Tony might have had for this summer was eaten up by Janey being in the hospital, and he has to work and I have to be here for Janey.  Taking her with me---I tried that last summer, and it didn't go well.  It's the opposite of a rest.  Summer school is a great respite for the time she's there, but then the day is over and again, I am basically trapped.  As is Tony.  There are so few places we can take Janey.  We don't get invited places much.  I can understand why.  If you host Janey once, that's probably about all you can take.  She isn't safe around small kids, she will get bored and scream after a short visit, she'll open your fridge and take things out, she'll find dangerous stuff you thought you had hidden well, she'll wet through her clothes onto your rugs or furniture---all things she's done.  And so we have become, over the years, more and more isolated.  I was thinking of summers past, with the boys.  We visited people a lot, we went to the town pool, we went to the beach, we went into the city.  We did a lot.  And now---we do nothing.

Most of the time, I do okay with doing nothing.  I'm pretty good at keeping myself entertained.  I have my garden, I have books, I have my kids and my husband, I have the Wild World of the Web, I have music, crafts, TV...I'm okay.  But lately, as I face down being 50 in the spring, I think about the things I can't do.  My parents are getting older, and I worry about them.  My nephew Zeben lives on the other side on the country, and I haven't seen him in years.  I have friends I haven't seen in years either, that aren't even that far away.  I am living a life that is smaller and smaller.

Maybe, lately it seems like there's a turn---a turn from thinking "This is how it is right now with Janey.  I can handle this on a temporary basis" to thinking "This is how it is for good.  This is the rest of my life."

This is a self-centered post.  I try not to be that way.  I try to focus on Janey.  But I'm failing at that today.  I'm thinking just about myself.  I would do anything for my children, all of them.  But somehow, I feel like who I am, the me that has the energy to be a good mother, to be creative and proactive and caring, is being chipped away at, by long days at home, long weeks of hoping Janey stays healthy and happy, long years filled with screaming and biting and progress that is so slow that it sometimes goes backwards.

Generally, I have little patience with myself for feeling this way.  There is something in me that tells me "You had kids.  There are no guarantees.  You are her mother, and you are lucky to have her.  You shouldn't go complaining about what life with her entails"   That is true.  But other times, I do a comparison of my life with Janey to the life with the probably 999 out of 1000 other kids, the kids that have friends, can go to camps and lessons and the homes of extended family, the kids that get older mentally, the kids that will someday have a job and maybe a family, the kids that might some day help their parents when the parents get old.  The kids I am lucky enough to have two of.  And in these darker moments, I admit to myself that although being a parent is tough for everyone, it's especially tough for our .1%.

I will get past this mood.  I don't have a choice.  I write about it, as I write about most things, for two reasons.  It helps me to write it out, to work out my feelings---that's the first reason.  The second reason is that I know there are others like me, and I want them to know they aren't alone.  We are out here.  We might never meet in person, for the reasons I talked about here, but it helps to know there are others living this life.

How Little Closed Doors Add Up

A while ago, I read this article about an IKEA playground---how a mother wasn't allowed to go in to the playground with her autistic 9 year old, so he wasn't able to play there.  My reaction at first was "Well, that's not much of a big deal.  That's their rules"  Then I got thinking about it, more and more, over the last few weeks.  Although that particular incident might not be a big deal, little closed doors like that one add up.  They add up into a world where so many, many places are closed to Janey and others like her.

Most of these closed doors are not formally forbidden to Janey, of course.  They are public places that legally, she's free to go.  However, because of her behavior and because I don't want to intrude on other people and their rights to use public places, I just can't take Janey to them.  For example, after our trip to the library, I realized that it was not a place for Janey, especially not with small children around.  Trips to playgrounds or to splash parks are not really possible, because Janey is bigger than most of the kids there and prone to lashing out at the little ones.  Restaurants are out of the question, for the most part.  I would not ever attempt a plane, or a longer train or bus ride, because Janey would scream at many points during the ride.  Church doesn't work---others can't quietly worship with a screamer in their midst, and Sunday schools or childcare aren't staffed by those able to handle Janey.  We can't go to movies or plays or concerts, because others pay to be there and it's not fair if they can't hear what they paid to hear.  If you start to think about this list, there are very few places we can take Janey.

I don't like the above list, but I can understand it.  I think sometimes of the Spock line from one of the movies "The needs of the many outweigh the needs of the few" (rest in peace, Leonard Nimoy!)  Although I COULD make a point of taking Janey to many of those places, and I know many children with autism could handle those places without making them hard for others to use, I know Janey, and I am not going to ruin a movie or a restaurant dinner or church for others to make a point.

What I don't understand, what I have a much harder time accepting, are the closed doors in places that are supposed to be for children with special needs.  I think often, more than is probably reasonable to think about, about the Saturday program run by the city that I got a flyer about from Janey's school, for special needs children.  The program had a 1 to 4 ratio of caregivers to children.  That made it, in essence, closed to Janey.  She needs a 1 on 1 ratio.  The program sounded so ideal, but, much like the other respite program we tried, it seems aimed at children with mild special needs, or perhaps children with special needs that are physical and not behavioral/emotional/intellectual.

A literal closed door that comes to mind for me so often is that of the Child Life room at Children's Hospital.  When Janey spent six days at Children's awaiting placement in a psychiatric hospital, we were not allowed to take her out of her room.  Right down the hall, there was a room chock filled with toys, books, games and the like.  We were not allowed in that room.  It was for the SICK children, the PHYSICALLY sick children, not the children like Janey.  I even offered to take her there in the middle of the night, when other children would not be there.  I would never, ever have gone there and put a little sick toddler in jeopardy.  I only wanted Janey to be able to play there if no-one else was there.  But that was not permitted.

Janey's old school, the inclusion school, was in so many ways a dream school.  It had a wonderful courtyard, an outdoor classroom, a beautiful sensory room.  It was filled with people that had known Janey since she was born.  I loved her school.  And then---it too was closed to her.  I understand the reasons---I understand the reasons for everything I've written about here.  But still---sometimes it makes me cry to think of all the places Janey is not able to go, all the doors that are closed to her.

What can be done?  I'm dreaming here.  In many ways, maybe nothing can be done.  Maybe my initial reaction to the IKEA story was the true one---well, that's just the way it is.  However, I will dream.  I dream of restaurants, parks, museums, churches, playgrounds, all of those, having special days for autistic kids and families.  If we had the urge to eat out, or go to church, or a park, we could look at a web page and find a place that had a special day going on.  Even if each venue only held such a day once a year, there's enough of those places that we'd almost always have a place to go.  My other dream is that programs for special needs could truly mean ALL special needs---that I could describe what Janey needs and it would be provided.  And a big dream---that someplace like Children's Hospital would treat mental illness like physical illness---that they would actually find a way to make children like Janey feel welcome, and not like a scary outsider.

Life isn't fair.  That old chestnut mothers tell their children is very true.  Everyone has closed doors, and I accept that.  But the amount of doors closed to Janey, and to children like her, create an isolation that builds on itself, that creates a loop, a vicious circle.  There are no easy answers to this problem.

We simply choose to forget

I've been trying for the last few days in my head to write a year end post that was cheerful, that summed up Janey's progress for the year, that sent out a message of hope and looking forward.  I can't.

The song "Memories" keeps going through my head unbidden, with the line "What's too painful to remember, we simply choose to forget".  That's what I wanted to do with last day of the year post, chose to forget what is painful to remember.  But Janey has been screaming for two days straight, just barely interrupted now and then for a few moments sleep.  I am exhausted, done for.  I have no idea what is wrong, and it's most likely it's just the demons that haunt Janey on a regular basis.  This effect is enhanced by the irregular schedule of the holidays.  Tony was home last week, but he had to go back to work yesterday.  Janey didn't take that well.  He's at work today again.  He'll be home tomorrow for New Years, which almost makes things worse, as she will get used to him home and then---work again.  She is supposed to go back to school on Friday, but they are predicting a big snowstorm, and that probably won't happen.  I feel at the end of my rope, at the end of my resources.

Yesterday I did a brief ride to take Freddy to a friend's house.  Just being out of the house for that little time felt like a treat.  I started thinking about how my world has gotten very small.  I love the few places I can take Janey.  We had a couple very nice evenings at friend's houses over the vacation.  But those are rare.  Mostly, on a regular day, there is no place to go with Janey.  The winter is even worse than the summer, because with the 10 degree weather outside, even when it's not snowing, there isn't the backyard or park option.  I look at Facebook, at friends' kids, going to outdoor events, playing sports and having sleepovers and going to parties and taking road trips, and at times, my jealousy overcomes me.  That's not a kind thing to admit.  I had those days, when the boys were young, but now, my life feels very, very small.  I sometimes fantasize when Janey is screaming the night away about the years long ago when the world was open.  I think for some reason about one night, when I lived in Orono, Maine, after finishing college, while my boyfriend then was in graduate school.  I had written a letter, and I walked to the end of our short street to mail it.  The sun was setting, and I had a sudden moment of elation, thinking how my whole life was in front of me, how I could go anywhere and do anything and be anyone.  I didn't often think like that, even back then, but that moment somehow has stayed fresh.  Now, I see only a very narrow path, a very closed world.  I will care for Janey until I die.  These might be the easiest years, with her in school and afterschool. Even that might be ending soon.  The school might no longer be able to handle her.  They might want to move her, and the one haven I currently have, with a place I know and love, with people I trust to love Janey, might no longer be able to care for her.  I am feeling, frankly, overwhelmed and scared.

And so this isn't a cheerful post.  It's an honest post.  I want very much to go into the "Memories" mode, to tell you all the good of 2013, to delight in my girl.  If I can't do that, I want to go into "good autism mother" mode, and put myself aside and stop my complaining and concentrate 100% on Janey, whether she is screaming or crying or not sleeping or whatever, to not have these selfish feelings of isolation and depression.  And all those failing, I just want to somehow feel hope that it will get better.  That hope isn't strong right now.  Tomorrow, I will try hard to start the year on a better note.  Until then, I'll just close with my most heartfelt thanks to all of you, for listening.

Christmas Blues

I know I'm not alone in having a hard time with Christmas.  Many parents with autistic kids do, as well as many other parents, or non-parents---many people of many kinds.  But I'd dare to say it's harder for parents raising autistic kids than it is for most.  I've been feeling it a lot this year---a very lot.  I feel like I'm going through the motions, trying to do the things you need to do for Christmas but not feeling them in any way.  I've been trying to figure it out---why especially Christmas?  I think it boils down to the isolation autism brings.

"Christmas is for children".  That's a phrase you hear a lot, and something I believe.  Once you are an adult, your main role is giving a great Christmas to your kids.  But what is your role if your child could care less about Christmas, if your child in fact doesn't have any real awareness of Christmas?  That is Janey.  I am quite sure I could skip the whole bit and she wouldn't care.  I could not have a single present for her under the tree, and she wouldn't even notice.  I could not have her hang a stocking for Santa, and it wouldn't bother her a bit.  It makes it all feel a little meaningless.  I will still have presents for her and a stocking, of course, but who am I doing it for?  I guess it's for me.  In a way, she might be happier if I DIDN'T give her a present or have Santa come.  She hates to open presents, and she has to be urged to check out what is in her stocking, sometimes to the point it annoys her. Christmas music is the only part of Christmas she seems to enjoy, and she would enjoy that just as much in July, with no holiday associated with it, if I played it then.  And so, if Christmas is for children, and your child doesn't care about or even like the Christmas things, what is Christmas for?  (especially if you aren't very religious, and I am not)

All around, you hear people talking about what their children want for Christmas, about how their kids are counting the seconds until Santa comes.  It's yet another part of life that autism steals from both Janey and me.  Writing this, I feel sort of petty.  I have my boys, and when they were young, they did all the childhood Christmas stuff, and I enjoyed it a lot.  So why is it so hard now?  I can't really explain.  Maybe it's accumulated lack of sleep, or school worries, or the constant edge I have, waiting for Janey's next outburst.  Maybe it's unseemly jealousy, of all the people with children that seem to be to be incredibly perfect, people that often don't seem to appreciate the amazing gift that that is.   Maybe it's the growing realization that Janey is not progressing in many significant ways, that what we have now is very likely what we will have for life.   But a big part of it is sadness for Janey.  I am sad she can't anticipate Christmas.  I am sad that presents scare and not delight.  I am sad she will almost certainly never have children of her own to give a Christmas to.  I am sad that a week from tomorrow will be like any other day to her---a worse that usual day, probably, because it will feature a changed routine.  I am sad for all that Janey will never feel or experience.

It might sound fake to say this after writing all I have, but I do wish anyone who reads this that celebrates Christmas a very merry Christmas.  I am having a tough year, but I am going to keep working on finding a way to make Christmas special for Janey.  I hope you all have found a way, and that you find joy and peace this year and always.

Isolation and Autism

For some reason, this weekend I have been feeling the isolation that comes with having an autistic child more intensely than usual.  Most of the time, I am okay with being a bit isolated.  I am a bit of a loner, although I have wonderful friends I very much enjoy spending time with, but I enjoy my time alone, too.  I can usually be happy for days if I have enough books to read or some good TV to watch or a game to play.  But lately, I have been thinking about how hard it is to connect with others with the restraints that autism puts on a family.  The kind of interaction that come naturally to most people and families doesn't for us, and I am feeling it more lately.

There's a lot of ways autism isolates.  I'd say the main one is obvious---just how hard it is to take Janey or other autistic kids any place.  We can't take off for a weekend to visit people, we can't get together casually with other families, we can't decide to go out to eat or to a museum or event or even shopping, without figuring out first how Janey will do, if she will tolerate however long it takes to get there, if she will freak out when she gets there, who will be responsible for keeping an eye on her at all, all times, who will hold her hand, what we will do if we need to leave---all that.  Most of the time, we don't even consider such expeditions.  They just are out of the realm of our lives.  We necessarily center our lives around our house, which is fine, most of the time, but it certainly gets closed in feeling now and then.

Also, when you have young kids, the main way you meet friends is through your children.  Your kids go to a friend's house, you take them there or pick them up and talk to the parents, and sometimes, you become friends.  You take your child to the playground, to lessons, to sports, to activities, and you meet people.  With Janey, that doesn't happen.  She doesn't get invited to people's houses.  We can't casually go to the playground.  The activities she can do often cost a great deal of money, which we can't afford.  We take her to school and bring her home.  That is what she does.

Autism also puts a strain on old friendships.  It takes a special kind of friend to understand how autism has changed my life, why I can't be the friend I used to be.  I forget birthdays, I am not there to listen, I can't get together without planning.  I am lucky to have friends that have adapted, but I can't spend the time with them I wish to.

As for couples events, that just doesn't happen.  Tony often gets together with friends from high school.  I have never met most of these people, although they sound great.  If Tony is going out at night, I must stay home with Janey, unless the boys can watch her.  During the school year, that is mostly impossible.  They have tons of homework, or their own activities.  If we are going to be out at all late, we don't feel right leaving Janey home with them either.  So I stay with Janey.

There's also just the exhaustion autism brings.  During the day, when Janey is at school, I either work at home, do housework or nap.  I don't use the time for socializing much, or nothing gets done.  It's very hard to do laundry or on-line work or catch up on night sleep I don't get while Janey is home.

I am very thankful for social media, but I do have to admit it doesn't replace actual getting together with friends.  Last night, I felt frustrated and alone and needing to talk to someone.  That's not the kind of thing I'm going to post on Facebook, or email people about.  I could have called a friend, but it was late.  That would be the case with or without Janey, of course, but I had reached that point due to the isolation that is there all the time.  I felt alone, I think, due to the restrictions on my life that keep me from being able to connect in person with people much.

So do I have a solution or point here?  Not really.  It's just the way it is.  To have friends, you need to be a friend.  We tell that to kids, and that's the problem.  I don't think I am able to be the friend I want to be to people any more, and that is maybe one of the hardest parts of this autism gig.

Thoughts about depression

I don't know if depression is the right word for what I often feel. It's not depression of the kind that comes out of no-where. It's depression that sneaks in quietly, evaluates the facts and settles in for a long stay, never completely taking me over but eating away at the edges of my mind. A quick search for "autism" "mothers" and "depression" turned up this article. It's 5 years old, but not much has changed in the world of depressed mothers. I like it very much, because it politely says what I often think---it's depressing to be the mother of an autistic child because it's just plain a very, very hard life with no relief in site. It's not some complicated to figure out thing, as the study mentioned in the beginning of the article thought. It's what the author of the article says---the social isolation that having an autistic child breeds, the lack of sleep, the monetary problems from not being able to work or from medications or treatments, the battles to get your child what they need, and most of all, I think, the future not having relief in site---the knowing that until the day I die, I will be responsible for Janey.

I'd add a few to the article---the tension that the autistic child creates in a household, that leads to everyone being on edge and more prone to fighting, the endless cleaning up of the messes the autistic child makes, the media finding a new way every day to point out how you inadvertently caused your child to be autistic, the few unkind strangers who make going out in public a minefield, the sadness from not ever being able to give your other children enough time, the worry about what is happening to your non-verbal child when you aren't with them...I probably could go on for a good long while.

And so I don't think it's strictly right to call what other parents and I often feel "depression". I call it more...a logical reaction. Tonight it is feeling that way, anyway. Back to trying to be upbeat next time, I promise.

Vacation week thoughts

This is the first day of the spring vacation. Optimist that I think I am deep inside, I start most vacations feeling fairly hopeful about them. It's good to have a break in the routine, and especially, for the boys to have a break from the intense world of high school. But mixed with that feeling is the dread I have of facing more than a week of keeping Janey happy and entertained.

The hard part is dual, really. Just keeping Janey happy in general is often a challenge. When she gets into a down period, she can cry for days on end, and it can be incredibly tough, both for her and for us. We've had a few vacations where that happened, but overall, I would say it happens less often than it used to. Keeping her entertained is the harder part. And that's where the dual problem comes in. With "regular" kids, there are endless things you can do to keep them happy during vacation week. You can pick up any parent's paper and see them---camps, children's museums, special vacation week programs at other museums, family restaurants, lessons, outdoor hikes---and then there's just the playdates and playing with friends that "regular" kids have. With Janey, none of that works. We get a nice little booklet here in the city called "Summer Stuff Jr." that lists summer and vacation programs for kids. There is not a one in there that could handle Janey. I went to a camp fair one time, and not one camp there was equipped to handle lower-functioning autistic kids. And I can't blame them for that. It's a hugely tough job. But it's the flip side of inclusion. School is inclusive, the world is not. If those camps excluded people based on color or religion or nationality, it would be an outrage we'd all condemn. But excluding kids based on disability----well, even I can't get totally outraged about that. We live in the real work.

And even with camps excluded, there is so little else we can do. Janey can't handle the overload of a museum or the mall. Eating out---that's something we attempt about once a year, when Janey is in an exceptionally good mood and we are all together. Even then, we often have to bail out. Playdates---well, that doesn't happen. All the kids like Janey, but no-one is going to invite her over for a day. It would be not a playdate, but a huge respite job for the parent. Even if I went with her, there would be no relaxing with coffee while the kids played.

And so we stay home, mostly. The boys like that. They can entertain themselves for years at home in today's connected world. But with Janey, the days get long. We play some iPad, watch some videos, play in the back yard, read books. None of those hold her interest for long. And she's left bored, and I am left tired.

What am I saying here, besides a rambling complaint? Well, my dream would be that some of the money given for autism would go for vacation and holiday week activities. Maybe a bowling alley could be taken over so autistic kids could have fun in an accepting environment. Maybe a museum could have an autism day, where no-one would mind the flapping and screaming and crying and odd behaviors. Maybe the empty schools could be used for a camp. There are a lot of families like ours. I dream of something like a "Summer Stuff Junior for EVERYONE".

The Buck Stops Here

Not a long post here, as my thoughts aren't organized in a blog-worthy way. Tonight I've just been thinking a lot about the essential loneliness of having a child like Janey. I am so much luckier than most, with a supportive husband and sons, a wonderful school, good friends and all. But when it comes right down to it, Janey is my responsibility. Mine and Tony's, but somehow, a mother is the most responsible. I can complain to others, get support from others, get help from others, but when Janey is screaming and I don't know what's wrong, or when I am overwhelmed by the inability to do any housework or cooking or reading or anything without Janey doing something messy or dangerous, it's me who it all reflects on. The house is a mess, I don't work as much as I should, I don't keep up with friends the way I should, I don't go to school meetings or community events or funerals or volunteer opportunities or anything like that as I feel I should. I know what I can do and not do, but it is very hard to explain this to others without it seeming like complaining or using Janey as an excuse. I am worn down. At times I want so much to just pour everything out to people, and I hold back from doing so, because it's not their burden. I am becoming more inwardly facing. I truly feel very alone sometimes, and I know I'm not, but in a way, when Janey has been crying for a long time, and the housework has built up and I have a drawer full of bills, I am alone. It's no-one else's problem but my own. That's the case with any mother, I guess, and it's my job, but tonight, it feels tough.